This is the story of our precious daughter, Sara Rose. She was born at 27 weeks. This details our journey as a family through the ups and downs of this situation. She is our 3rd daughter, she has hydrocephalus and now lives with a shunt. She is home now and her older sisters adore her. Here we are, living and depending on the strength and grace of our Father in Heaven.

Tuesday, September 1, 2009

A Long Day

We went to bed last night at an early time, trying to catch up on sleep. Knowing we would have to wake up for an early appt with the Neurosurgeon. You may remember I posted about a spot on her head he was watching and wanted us to return in a week to check. Well that appointment was originally scheduled for Wed, but got moved to Tuesday due to his surgery schedule. Jennifer always takes the first shift with Sara at night. She is still somewhat colicky at night, although it has improved. I was supposed to switch with her at 2:30. But I woke up before two to paint - peeling screams from Sara across the house. I thought - uh oh, that does not sound good.

I got up and went to help. She had eaten, but thrown up. So immediately your trying to figure out why she threw up. Stomach Bug? shunt? Fever? I was able to hold her and she calmed down and slept nicely until 4. I tried to feed her thinking she was hungry - throw up again. I leave at 5:30 to get some pedialyte, come back we try again at 6:30 - more throw up. More throw up again closer to 8. Now we are planning to go see her pediatrician after the neurosurgeon. At some point in all of this process we thought to check her fontanels (soft spot on head) and there was a definite increase in pressure. A sign that something was wrong with the shunt. Hmmm, thank the Lord for the change in appointment and we would see him at 9.

The neurosurgeon checked her out and was not immediately alarmed, but concerned enough to send us to the ER where he would tap the shunt and make sure it is working. So we eventually made it there, he tapped it and immediately saw by the cloudiness of the cerebral spinal fluid there was an infection. So in the next 37 seconds he tells us the plan. Externalize the shunt. This means he cuts open her stomach, fishes the tubing out of her abdomen where the shunt drains and let it drain into a bag. If there is an infection you don't want it to continue circulating in her body. Let antibiotics clear it up while she was in hospital for 7-10 days and then take out her shunt and put a new one in the other side. We couldn't believe our ears. You have to be kidding me. This is not real. I'm watching this happen to someone else right?

We continue to wait in ER as IV's are put back in Sara, CAT scans are done, X-rays, and then he comes and says they are going to externalize the shunt right now. So we took her to surgery and waited for the very simple procedure to be done. From there we were put in a room where we could not feed her, change her diaper, pick her up - but we could sleep near her, hold pacifier in her mouth, and just be there. At that point I left to go get some things to come back and spend the night. Jennifer was left to tend to her and man did she get the worst side of it.

Sara was extremely irritable, fussy, unhappy all afternoon. Couldn't be soothed. Couldn't hold anything down. And now the docs start coming in and talking about the seriousness of the infection. It is bacterial meningitis. This is the worst kind and you can read about it here or just Google it. It is very much life threatening, could cause more brain damage, loss of hearing and/or sight. Vegetative state is also a possibility. Basically her nervous system and brain are under attack.

The doctor thinks (I do not know to what degree of certainty) that a germ from her skin attached itself to the shunt before it was placed and has been circulating through her body for the last 5-6 weeks. Now it is full blown meningitis. The neurosurgeon believes she will make it, we caught it early enough. We hold fast to his optimism. We hold even faster to our gracious God.

So Jennifer is there by herself absorbing all of this. Then they decide it would be best for Sara (and I think us too was part of equation) to move her into an ICU setting with limited visitation by parents. No visitation by anyone else. We can only go at 9, 1, and 5 around the clock and stay 30 minutes. For Jennifer this was heart wrenching. But we both agree know it is a blessing in disguise. It would be emotionally unbearable to tend to Sara in the pain she is in. We need her to just rest and be int he hands of great nurses. Her condition right now is so critical she has a nurse to herself. They don't even do that in NICU. We have it figured out to where one of us will be there for all but one of the times. And so hopefully we'll get a courtesy room and be much better off.

We kind of feel like a boxer who just won the title in a 12 round decision only to be told by the ref he has 12 more rounds with a fresh boxer to keep the title. But while our strength is limited - His is not! While our faith may falter - He does not. While our emotions may stretch to the breaking point - His hand holding us up only gets stronger. That is what it means to be a Jesus follower and to know personally the Shepherd who leads us beside still waters and through the valley of the shadow of death. Pray for us and Sara of course. We know you will. We'll keep you updated as always.